Hi,
One day my doctor told me I had 5 years to go with my kidneys, I'm now plus 8 years and remind her when I see her with great satisfaction, I'm still alive. Anyway being given a expiry date motivated me to take action. I stopped all excessive exercise, went on a "kidney friendly"diet and took it to excess. No red meat, nothing to drink but water, absdolutely no salt or sugar, I'm diabetic, and no man made or aborted foods. I stuck with a small meal per day mainly of vegitable, if possible home grown. No eating out for fear I'd be eating something off the list. Switched to wholemeal bread and plastic butter with shaved ham on and no sauce, shaved ham being the thickness you can see through, no more than one sandwich a day. Changing diet and lifestyle was easy as I was dealing with several health issues. I eventually realised my kidneys would last longer than 5 years and relented on the diet and lifestyle. It had become extremely difficult to stick to my diet it being restrictive beyond reasonable. I learnt that most sugar substitues had the base ingrediant of aspertane, something that causes more damage to kidneys than real sugar, that stimulated me to throw away all the dark soda I had stocked, 30x 2 liter bottles. For those unaware aspertane taxes the kidneys and eats the bones while the dark colouring is chemical which the kidneys can not filter. The recomended amount with fully functioning kidneys is one small glass per day, I was getting trough 2 liters per day.
Now days I still refrain from off the shelf rubbish but have started back on a small amount of salt and sugar. I eat lean red meat once every 2 to 3 weeks but a very small portion. I have advanced to black tea with a splash of trim milk, the milk with all the good stuff removed and a few grains of sugar. I'm still able to tolerate my ham sandwich and will sub it out for 2 boiled eggs occasionally. Because of my other health issues my diet is constrained to simple things and a limited amount of food and fluid per day. Yes I fight hunger every day. I stopped all medication that could effect the kidneys, fortunately I have a very high pain threshold and am able to forgo painkillers. On the rear occasion pain gets the better of me I have opioid based painkillers at hand.
I learnt to bake my own sugar free cupcakes and share the cooking duties so I know what is going into each meal.
Because of my food and fluid constraints I watch the colour of my urine trying to keep it a light straw colour. The theory goes keeping urine between clear to straw colour and your kidneys are working well. If you are consistantly clear you are over hydrating and conversely if it is dark you are under hydrated.
I haven't eaten out in 13 years and not seen fast food at all in that time. I have discovered by restricting my intake of salt and sugar the brain re-educates itself to believing it is not required for life to exist and you rediscover what food actually tastes like, naturally. Funny though I persist with a few grains of sugar in my cups of tea, I don't stir it and it is not enough to change the taste, yet the brain thinks it tastes better! The other side of that coin is that everything pre-made tastes salty or sweeter, that helps me stay away from it.
My mother-in-law died recently at 95, her GFR for the past 7 years averaged GFR18, no medical help or intervention and certainly no restriction on what she ate or drank. Yes her movement was impinged but she lived oblivious to the state of her kidneys. I'm 73 with GFR 38 I see no reason to panic, I have enough to see me through barring anything drastic to change my situation.
Most of us get into a dire panic when first diagnosed because it is not explained to us. CKD is kidney disease not kidney death, yes changes will be required but life goes on. The very day I was told 5 years to go I went home closed my busines, paid off all my debits and wrote my will, then sat and waited for what hasn't come, yet. The only good thing to come of it is I'm ready for the inevitable, retired and enjoying as much of life as I can well aware of how fragile life can be.
Cheers